IEP for Fibromyalgia

[Jessicaadrianne]

Hello.  My 16 year old daughter was diagnosed with Fibromyalgia 18 months ago.  She has experienced level 7 thru 9 pain until we finally enrolled her in online school.  With a very structured schedule, her pain is down to a 3/4 most days.  

We are currently trying to to get her screen for Special Education services (IEP).  The school has been most reluctant as she is very smart and can get reasonably good grades while only attending school 2 or so days a week.  But attending her current high school of 3000 kids is just too much for her physically (she also experiences pain fog, anxiety, depression). 

I am looking for research or other information specifically focused on pain chronic illness that limits a student ability to attend school.  She is miserable and lonely at home.  She wants to be in school.  I am looking for any ideas/cases/ research that might help us figure out what to do next.

She is going to be screened for a disability but they have already said she won't qualify.  Our other problem is the online learning program where we are stinks.  No instruction, teachers don't respond to questions, etc.  she also has no access to any higher level courses, etc.  just very basics. 

She has a 504 but the accomodations just aren't enough.  So looking for any help or suggestions to get her through the next two years but with options to attend college if she chooses too.  

Thanks... I hope this was an ok question to ask.  My husband was a Special Ed teacher for 20 years and even he is stumped where to go with this.  

[Lisa Lightner]

This is absolutely the right place to ask this question. You’re not alone in this, and you’re right to push for better options for your daughter.

1. IEP Eligibility & Chronic Illness

Yes, your daughter can qualify for an IEP under “Other Health Impairment” (OHI), which includes chronic conditions that limit strength, vitality, or alertness—including pain conditions like Fibromyalgia. The school saying she “won’t qualify” before even evaluating her is not how the process is supposed to work. If they’ve already made up their minds, that’s called predetermination, and it’s a violation of IDEA.

If you haven’t already, submit a written request for a Full and Individual Initial Evaluation. They are legally required to evaluate her once you request it in writing, or if they refuse, ask for a Prior Written Notice (PWN) explaining why.

2. Research & Precedents

Schools often push back when a student is “smart” or earning “reasonably good grades.” But the law isn’t about grades—it’s about access to education. Chronic pain, fatigue, brain fog, and anxiety absolutely impact her ability to access learning, even if she’s pulling decent grades.

Some key points:
Case Law & Precedents: Courts have ruled that students don’t need to be failing to qualify for an IEP. IDEA protects students whose disabilities affect their ability to access and benefit from education, which includes attendance, participation, and engagement—not just grades.
Chronic Illness & IDEA: The US Department of Education has guidance stating that chronic illnesses can qualify for IEPs under OHI if they impact a student’s ability to attend school consistently or require modifications.

3. If an IEP is Denied

If they refuse an IEP after the evaluation, you have options:

• Dispute it (request an Independent Educational Evaluation, file a state complaint, or request mediation).
• Fight for stronger 504 Accommodations: If an IEP isn’t an option, make sure her 504 actually works for her. Things like:
  • Hybrid schedule (some in-person, some virtual)
  • Access to AP/honors courses online or in-person
  • Live instruction and teacher response time guarantees
  • A modified school day
  • PE exemption
  • Additional time for assignments due to pain flare-ups

A 504 is only as good as what’s in it. Schools may do the bare minimum unless parents push.

4. Better Online Learning Options

Since the current online program isn’t cutting it, you could look into:
Dual Enrollment: If she qualifies, some states allow high school students to take community college courses for credit.
Homebound Instruction: Some districts offer teacher-supported home instruction for students with medical conditions. This should be be viewed as a temporary, last resort. 
State-Sponsored Virtual Schools: Some states offer virtual learning options than what districts provide. Be careful and research thoroughly--their success rates aren't fantastic. 

5. Social Connection & Mental Health

She’s miserable and lonely—that is a huge issue. Even if the school drags its feet on academic supports, push for ways to help her stay engaged socially:
Can she participate in clubs, activities, or sports (even part-time)?
Would the school allow her to attend part of the day in-person for certain classes?
Could she access counseling through her 504 for mental health support?

Your instincts are right—this situation isn’t sustainable for two more years.

[JSD24]

My suggestion is to enroll her back into the brick & mortar HS and at this same time explain that she currently attends a cyber HS and completes her work in 2-3 days.  With moving to a 5 day per week school, you feel she will need, AT MINIMUM, a 504 and possibly an IEP.  (The difference is that 504s provide accommodations.  An IEP does too but adds specially designed instruction which I'm not sure is needed.)  If she's successful in her current school, I can see them saying no to an eval.

My other thought is to keep her in the same school but see if she's eligible to do extracurriculars at her local HS.  I'm in PA & this is allowed.  Not sure where you live so you might need to research this in your state.  She's be able to do sports or the school play here.  My state also has an option where homeschool students (this would not be for a student going to an online public school) can spend up to 1/4 of the school day taking classes in the local school.  Not sure if other states have this option.

In my area, most of the brick & mortar public schools also have a cyber school.  The one in my district doesn't offer all the classes you need to get a diploma via the cyber school.  This might be a good situation given her medical issues.  She'd have some classes that are cyber and some classes that are in the school building.  Transportation during the day would be on the family in this situation.

I know you asked about an IEP for her but I wanted you do be aware that there are options that are outside of IEP & 504 for students like your child.